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Author
Topic: Changes (Read 15652 times)

I havenít logged in here let alone posted anything for a while; had lots of stuff going in my life; work, (yet another!) house move, spending time with family/friends and trying to get organised/settled etc. Plus Iíve been trying to spend less time online.

Nevertheless, when I do pop on I lurk here to see whoís around to grab on Skype/MSN and I quickly skim Living With and Long Term Survivors to make sure no-one I know is ill (I apologise if Iíve missed anything though, as I really do skim!)ÖAnyway, it was actually Markís thread Of Meds and Mortality in the LTS forum that prompted me to write this.

Many of you know that I did the move back to the UK from Greece in July; I was staying with my parents while I found somewhere to live; I'm now living in my own place back in the area I wanted to be; and me and cats are all happily settling in.

Also, some of you know (but most donít) that my time has come to start meds. My consultant had The Conversation with me mid-November, gave me a few weeks to get my head around the idea, then I went back to see him after my house move early this month.

Having already carried out the genotype test for abacavir sensitivity (which was negative) he decided to try me on Sustiva and Kivexa; I collected the meds like a good girl, took them home and promptly put them in the kitchen cupboard.

Starting meds was always my biggest fear in my journey with HIV; as someone who never so much as popped aspirin for headaches, I loathed the idea of having to take something that may well wreak havoc (or Armageddon, as a new friend recently said!) on my body and mind, if not in the short term then possibly in the long term. And the thing is this isnít like taking an aspirin for a headache; once on them, thatís itís for life. Ech!

I thought I was doing really well; 8+ years positive and med-free I guess I was; my doc thinks so anyway. But my last few blood draws had started to show unfriendly trends, so he decided it may well be time; I all but threw a full-blown hissy fit at the prospect.

But anyway, I went away from the consultation, read the info he gave me and chewed over his words and advice. After deciding Ďokí, collecting the meds and leaving them untouched in the cupboard for 2 weeks, after my last day of work I promoted them to the coffee table in my front room.

Having read the info and browsed the lessons here and spoken with friends, I knew what the possibilities could be from starting. If I was going to do it, I was going to do it when I didnít have a 7am start or classroom full of thirty 7-year-olds to contend with.

So, a week ago today I took the plunge and started them. My best friend came and spent the night (love her!) and my parents came and stayed a day or so later (love them too!). Incidentally, the side effects/non effects are not what this post is about; this post is about changes, in my life and in my mindset.

When faced with the decision of whether to start or not, I discussed it (and my fears) at length with my doc (who is fab by the way). In a nutshell, he said this to me: Debra, in the long run, whatís the difference in being on these meds 50 years or 52 years? If you wait, even 6 months, the way your numbers are going you may do irreparable damage to your immune system; if you start now that is much less likely to happen.

It was in that moment and the weeks that followed that I suddenly realised I feared something in my journey a lot more than starting meds or even death; I feared getting irreversibly sick, to the point that my every day life was severely impaired; a life that I have fought tooth and nail to get back on track; a life that Iím growing to love again.

So, I literally said: Ach, feckitÖokayÖletís do it.

The thing is HIV isnít equivalent to a headache, so it goes without saying that the meds to treat it wonít be the same either; but in the same sense, if left untreated, a headache wonít kill me, whereas HIV/AIDS undoubtedly will; and from all accounts, it wouldnít be a pretty death. So at this point in time, if it's a toss up between possible side effects/adjustment or getting horribly sick, then possible side effects/adjustment it has to be.

Basically, I choose life, as long and as healthy as possible. And Iím thankful for my options.

Debra

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

great choice, i second that motion. also, thanks for posting this. i'm not on meds yet and your sentiments echo my personal fears. that decision is definitely not an easy one. how have things been since you've started your regiment?

It was in that moment and the weeks that followed that I suddenly realised I feared something in my journey a lot more than starting meds or even death; I feared getting irreversibly sick, to the point that my every day life was severely impaired; a life that I have fought tooth and nail to get back on track; a life that Iím growing to love again.

So, I literally said: Ach, feckitÖokayÖletís do it.

Hey Debra Dumplin,

I was just thinking of you this week and the time we spent on the shore of Lake Mead last year. A fond memory, to be sure.

I applaud your insight on meds and your decision to begin them. I know its not an easy thing to do.

I think you said it beautifully and very well. What some folks don't seem to realize is life doesn't remain constant. Living half a life was never on my agenda, so, like you, when the time came, I made the same decision you did.

Of course, that was 12 years ago, but I digress.

So, my dear, how are things going with the meds? I hope well.

I'll be keeping you in my thoughts and sending positive energy your direction.

good for you on taking your pills. I also read Mark's thread Of Meds and Mortality and found it a very good read. I liked David's (Redhotmusclebear) take on the issue. For some of us, when we were offered meds, the alternative was the death which we had already seen among so many of our friends. There really was no choice. Today's alternatives are not quite as dire but it is still a life-changing experience and one that should not be taken lightly. And even if the consequences of not taking your pills is not as final as it once was, I would never, ever, question anyone who had doubts about doing it.

Congratulations on 8 med-free years. 2007 has been quite a year of change for you (as it was for me as I got to meet my very first Manchesterians) but I think you'll find the future somewhat less turbulent.

I know how difficult it is to start taking HIV meds. Once started, it is usually a lifelong commitment.

On the plus side, I do think that the meds available today are generally not as difficult with regard to side effects as they were back in the late 1980's to late 1990's. There are still side effects to contend with, but if you have trouble with a drug, there are generally others that you can try.

I hope you're tolerating your regimen without any problems.

As I get older and see more of my friends taking pills for all sorts of conditions (high blood pressure, high cholesterol, etc., etc.), it's gotten a little easier to wrap my mind around my own pill taking routine.

I wish you the best of luck and hope 2008 will be a very happy and healthy year for you!

I know what you mean. I had gone 10 years without meds. But I knew the day would come when I would have to start. I thought I could handle it too and actually shed a few tears. But I gave thanks that my body fought as long as it could w/o any help. I just started meds in Sept and am grateful that I had very little side effects. In the end, the meds kind of put things in perspective. Wishing you the best.....

Dear Debra...You speak eloquently of having the meds ready and being uncertain of exactly when to begin taking them...We all know the feeling...I started in 1995 and have had my ups and downs emotionally but in the end I have been healthy since that year, no hopsitalizations, no major illnesses.

Good luck, keep us posted and keep on truckin'

Jody

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"Wake up to find out that you are the eyes of the world". "Try to discover that you are the song that the morning brings."

I just really wanted to say good luck to you. I can only imagine that it is a difficult decision but it appears to be one you have treated well. You are a special person and I like your posts and I look forward to there being 52 years worth of them.

R

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NB. Any advice about HIV is given in addition to your own medical advice and not intended to replace it. You should never make clinical decisions based on what anyone says on the internet but rather check with your ID doctor first. Discussions from the internet are just that - Discussions. They may give you food for thought, but they should not direct you to do anything but fuel discussion.

Thanks for the post Debra.I can imagine how tough it is to make that decision.However, believe me, it is nothing compared to 1995 when we, the pilltakerguineepigs, were sicker then sick from the meds. As a matter of fact, those meds (AZT) hve killed many a pozzie...

Now, have a merry Christmas and all the best with your start-up hon.

Love

hermie

« Last Edit: December 23, 2007, 06:24:35 PM by heartforyou »

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Diagnosed in 1987 and still kickingKivexa (Epzicom),Tivicay once daily.

Deb,I was scared, but after eleven years and a bout of PCP, I took the jump. You know, it has not been the terrible life I thought. I feel pretty well and having AIDS not HIV for the last six our of 17 years or possibly 18 years of being infected.

You got your family here when you need us. Love you and Merry Christmas.

Its nice to read that you have great support around you via your friend, doc and parents! I have been on meds since '95 and have found it to just be a way of life now. The doc told me to take meds, so i started taking them. In '95 I didn't have the luxury of not taking them when my CD4 called for it. I have never been hospitalized and I have never been sick. December 22nd marks 14 years since diabnosis for me.

I am happy to read that you have chosen to take meds. I thank God every day for the doctors and researchers, and also for the people taking meds in the new trials, who have brought so many options to us today.

It is because of these people that we have choices today, and you, my friend, have made a good one.

Many thanks for all the comments/pms/emails and well wishes guys and gals.

To answer the questions about how goes it so far, I think so far so good, in all honesty. Iím not side effect free, not by a long shot, but Iím also not ill or feeling like death, so thatís a start I guess.

Few first days = nothing untoward, followed by a couple of nights of slight but bearable nausea (if I didnít sleep pretty much right after taking the meds). However, Friday night and the weekend just gone was the scary time (isnít that just typical over a weekend??).

Friday night, I became really ill, splitting headache and vomiting; however, Iím now not convinced this had anything to do with the meds; rather suspect it may have been the unlucky timing of a 24 hour bug, as it passed as quickly as it came.

Saturday afternoon I broke out in a rash and I mean Rash with a capital R; all over, totally unforgiving. Strange thing is though, apart from feeling a bit headachy and constantly flushed (no fever Ė kept checking) I didnít actually feel ill. My appetite came back with a vengeance Saturday evening and I even managed to wolf down a Chinese takeaway!

Me and my rash quietly sat Sunday out (seeing as I still wasnít feeling ill, just bit itchy) and today (Monday) I took myself to the clinic to get checked out; my docís words were along the lines of: ďOh my! WoohoooÖlook at you!Ē as I glowed my way into the clinic!

He concluded (99% certainty) that it was a normal (albeit harsh) Sustiva rash and not the not-so-normal abacavir sensitivity rash and that it would clear up in the next few days or so; in the meantime I have antihistamines, aqueous cream and calamine lotion a-plenty to stave off the itching; and Iíve been given clear instructions what to do should something horrible happen over the next 2 days (when the world grinds to a halt for Christmas!). So I generally feel okay about it.

Huge thanks to Chris (ManchesterUK) who happened to be visiting me Saturday; on witnessing the rash appear he decided to stay the night to keep an eye on me; even though I wasnít panicking, I felt utterly grateful not to be faced with the prospect of being alone if things took a turn for the worse in the wee hours. So big kiss to you, my friend! X

Huge thanks also to Matt (the Newt), Matty (The Damned One) and Ann, who were on the other end on the phone with words of advice and who called to check up on me over the weekend; thanks also to Mark (Iggy) who sent regular texts to see how I was getting on. Big kisses to all of you too! XXXX Also, Niki (Miss English) and John (Oso): thanks for your texts/calls over the last week or so to see how I was getting on; big kisses to you both for that too! XX If I've missed anyone, I apologise and send big kisses to you too! XXX

So, like I said, hiccups aside, I do believe itís so far so good. Oh and in spite of the Friday sickness and current rash, yesterday I actually felt more energised than I have felt in months! Bizarre eh? My doc has repeatedly told me the one thing worth bearing in mind when contemplating the minefield of starting meds is that, amidst their fears, there is one big side effect that many people seem to forget about: The huge probability of starting to feel better.

Although saying all that, I won't be going any place (except family) where there are other humans with seeing eyes until this bloody horrific rash clears up! Just hope I don't scare my nephews tomorrow...!

Iíll keep yíall postedÖ

Debra

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

You could always tell your nephews that you were just so darn excited about Santa coming that you broke out in a rash!

My 2 eldest (13 and 14) know about my health so it'll be easy explaining it away to them; the youngest (8 ), I'm thinking of telling him that it came about through eating too many sweets and chocolate, hehe...hohoho indeed!

Miss Grinch

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Debra, my love....I got your text about the headache, but I seem to have missed the part about the rash. Will set up a display of Calamine lotion, Benadryl and Zantac in your honor on my Christmas altar (plus a few catnip treats for Yin and Yang).

Hopefully Santa has already left something in your Christmas stocking that will soothe your discomfort.

You and I have talked together many times about our mutual apprehensions to starting meds, and as I said in our conversations - I am not glad to have you take the lead on this path.

You mention many who you are grateful to in helping you begin your meds, but I wanted to make a point of thanking you.

Yes, I do thank you for putting yourself out there on the boards and sharing with many what your experience in this new part of your life is like - something I am certain that many who are facing meds for the first time will agree. More closely though to my thoughts on why I am grateful to you is your strength as an example to me for when that day arrives, it is inspiring and something I hope to emulate.

It's good to hear from you again, Debra. Been wondering when you'd be back online after your move. Glad you and your cats have a new home of your own now.

Your thoughts and process about accepting and dealing with going on meds ought to help others who are likely at some point to be on the same path. We're here for you as you continue to make your way. And call me an impossible optimist, but as the development of new meds continues, I'm expecting some that will be even more tolerable and effective so tuck that thought away if you will.

First, it's good to see you posting again. As for starting meds, for me, it was a no-brainer. I had discussed starting 'em on my Dec. '06 appointment with my ID Dr. As it turned out, I started them while in the hospital with pcp. There really was never a discussion of whether or not I was willing to take them; it was just assumed that I would. As it turned out, it was the correct assumption.

See, I really don't like not being in control of what's happening to me. I felt that my health was really not under my control... an increasing viral load and a decreasing CD4 count and a new AIDS diagnosis to top it off! Besides the usual things, eating well, exercise, etc, starting meds was the only thing that would even come close to putting me back in control. I know it sounds odd, but I was actually looking forward to starting meds. I've been taking Atripla for a bit over a year now. I feel great - lots of energy and, just as important, I don't have that anxiety and stress that was screwing with me pre-meds.

Good luck with your meds. I'm not familiar with Kivexa, but I am with the Sustiva. I take it in the morning, which works great for me. The side effects from it are all but unnoticeable. The Truvada part of Atripla doesn't bother me, either. All my labs (cbc, HIV, cholesterol, the works) are good. I'm wishing the same non-issue with your meds. Oh, and I hope the headaches and nausea problems go away. If not, there are lots of other meds to choose from. Congrats on YOU being in control and have a great new year!

Rash is fading, slowly but surely; havenít felt ill at all these past few days; if anything (strangely enough) Iíve had more energy in this past week or so than Iíve had in monthsÖyears even! After mentioning this newly discovered energy to my doc the other day, his response was: Of course you haveÖyouíre buzzing off the drugs!

Granted, these bursts of energy seem to be intermittent with one or two sudden lulls a day, but I'm guessing that's simply to do with the meds working their merry way through my system and attempting to establish some kind of balance.

So anyway, fingers crossed it was just the all-too-common Sustiva rash and here's hoping Iíll be able to welcome in 2008 with a continuing abundance of get-up-and-go, as well as unblemished skin.

Thanks again everyone for your advice, comments and kind thoughts.

Debra

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

You mentioned you're getting your energy back. ("...Iíve had more energy in this past week or so than Iíve had in monthsÖyears even!".) My god, Debra, if this is true then I'm running scared. You see, in SF you had so much energy you ran be ragged. At least now I know what I'm doing for New Years. Just thinking of you will put more pizazz in my step than any champagne or whistles or horns. I'll just lay back and think of you.

Debra, thanks for such boldness and candor and sensibility re: your decision to take the meds. I am sure i will have to go on them someday, and it's great to see that you, like so many others, have taken a brave decision. Keep us posted!

JAN 21: Just over 5 weeks that Iíve been on the meds and a month since I started this thread.

Hello allIíve not been around for a few weeks; lost my internet connection at home and have only just got it up and running again. Anyway, thought Iíd resurrect this thread with an update for anyone who may be interested.

The Sustiva rash took about 10 days to clear, only to be replaced with manic mood swings; and by manic Iím talking from euphoric to suicidal to homicidal. This actually crept up on me over a week or so and the worst of it lasted for about 3 days. [Edited to add: Just to be clear, the manic-ness actually abated to more of a plateau after those 3 days.]

I saw one of my clinic consultants about this and she gave me the choice of changing my combo or sitting it out and waiting to see if things level out; so, Iíve decided to sit it out. Iíll give it 3 months and, providing I havenít killed anyone between now and then (myself included) Iíll see how the land lies and make my decision then.

No weird dreams (well, no weirder than usual); if I sleep within half an hour of taking my meds, I sleep right away; if I leave it longer, I get nauseous, slight indigestion and struggle to fall asleep. Oh and I performed a little experiment to see whether eating something with high fat content would actually do anything: note to self, do not eat cream cake too close to taking meds (I blame Mark Ė he knows who he is!).

For the past week or so, physically, the energy surge I originally experienced has gone; despite sleeping well and waking up at exactly the same time every day, Iím struggling to get up in the mornings (not like me at all) and my energy levels are quite low throughout the day. Emotionally, Iím feeling kind of flatÖthe only emotion that seems to be surfacing with any regularity is anger (which I suspect to some degree is linked to Ďunfinished businessí, which I am working on getting finished).

And, as someone who is no stranger to depression, Iím quite sure it is chemical rather than situational. I say this because despite my flatness, Iím managing to do a lot of daily stuff (like work, cook, read, see my counsellor, get massages, see family/friends etc). I know myself well enough to know that when Iím Ďdepressed depressedí I wouldnít be doing any of those thingsÖ

So anyway, thatís where Iím at.

Debra

« Last Edit: January 21, 2008, 12:36:08 PM by sweetasmeli »

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/\___/\ /\__/\(=' . '=) (=' . '=)(,,,_ ,,,)/ (,,,_ ,,,)/ Cats rule!

The difference between cats and dogs is that dogs come when called, whereas cats take a message and get back to you.

Lots of people can't handle Sustiva sooner or later. I had the same thing, although it took me longer to recognize it (more than a year). I was functional too, but really struggling. It was actually my social worker that suggested I was going nuts from Sustiva. So it's very good you are able to recognize it yourself. All the insomniac things were there for me too, including the feeling of never being rested even when I slept long hours. So I switched to Viramune. Problem was it was weaker and I became resistent in 3 months or so and had to change to PIs. I don't know what other option is there asides from Viramune to replace Sustiva.

Lots of luck with the meds & the rest, take care

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"If you keep one foot in yesterday, and one in tomorrow, you piss all over today". Betty Tacy

It breaks my heart to know you struggle with the meds .Sustiva drove me nuts.. exactly : from suicidal, to homicidal. I yelled and screamed at my employees.. and I acted like a fucked up, drugged animal.I had to get off it and my combo now is like a light breeze compared to the hurricane of Sustiva.Debrah.. don't make my mistake and hang on to that combo too long. It is dangerous and emotionally ravaging..You are a virgin ( as to meds my dear) so, there are plenty of combos out there for you.

Take good care of yourself and keep us updated.

love

herman

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Diagnosed in 1987 and still kickingKivexa (Epzicom),Tivicay once daily.

Debra,I am so very sorry to hear that you are going through this stormy period. You are one brave soul to share with the world this problem. Thank you for doing that. I'm sure it will help many of us in the future, including yourself.like Hermie said(well let's skip the Virgin part lol) there seem to be many other choices out there for you-thank God!I hope you bet over this hump. I'm sure you will. Having met you in San Fran, I saw a very beautiful, and courageous woman.

Debra, I am so glad you posted this. I'm on Sustiva and I have wild mood swings also; and am on something for that. I guess I always thought the Sustiva thing as far as affecting moods was over in a short while. Obviously not, from what you and Hermie have said. I'm treatment experienced, and not sure what would come up next as far as meds is concerned, but I'm not going to go through this if I know there's options out there. Thanks again, Debra!

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I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

I missed this whole thread during my Christmas absence. I can't comment on the drugs you are on as I've not taken them. Hope all goes well though and you can work through this flat period. From experience, a flat period for you would be akin to overexcitement for me. Thinking of you.Steve

I'm sorry you're having such a bitch of a time with Sustiva. Hubby and I don't seem to really have any emotional side effects; it's amazing to me how that drug can effect different people so differently. I think it's good to give it time to straighten out. You'll know when enough is enough... even if you don't make it to the three month mark. Like others have mentioned, there are many other combos that don't have the same emotional side effects. Take care.

I've only been on it a week, but I feel exhausted all the time, can't sleep, have a fever most of the time, and worste of all, by far, I can't seem to eat anything. I have to force feed myself and everything tastes disgusting. I've lost 5 kilos!

We've discussed much of this and you know my thoughts (despite the occasional really odd curve ball that I may throw your way) but I just wanted to say publicly again that I think you have been an inspiration on how you have handled the start of meds.

There is no dressing up of the reality of the problems that meds can cause nor is there any sense that all is going to hell either - just honest truth of what your experiences are and how you are dealing with them. That alone is a guide to many on the reality of what hitting this period in our life (beginning of meds) can mean.

I started Atripla (which has Sustiva as a component) on Dec. 28. About two weeks ago I really noticed the mood swings as well but had no other mentionable side effects. Last week I was damn near suicidal. On Sunday, I had a choice to slit my wrists or get out of the house and go meet with friends. I got out and that helped immensely! I'm not sure if my depression is chemical or situational but I do know that I've been better the last few days - not great or perfect but definitely better. Like you, I'm going to try and stay on this as I'm convinced that Sustiva can be a real God-send when it comes to my viral load and CD4 counts.

I'm hoping that if the depression is a result of the meds that it will run it's course and life will seem normal again. So far, like I said, things seem to be getting better. While I hate that you are experiencing this, I hope it's helpful to know that you are not alone. It's helpful for me to know there are others out there that know what I'm experiencing.

The past week or so was Very Difficult but I'm beginning to suspect that it may have been a case of Sustiva nastiness coupled with pre-menstrual crappiness, as the angry cloud seems to have lifted and I'm feeling 'less flat'.

First bloods after one month on de meds: CD4 = 438 (up from 250-ish) VL = 40.

So, in spite of my struggles, I guess I now have one big reason for trying to stick with this combo.

Debra

Then again, what if you could get the same results on a different combo without the phycho/physio issues, Debra. Poses a delimma, I understand. I applaud your diligence in sticking with current meds, however, cause the side effects would have overwhelmed me.